Happy Fourth of July!! Backyard barbecues are in full swing today and it’s our first Fourth with none of our three kids home, so I was really excited to be invited to a family barbecue with my Best Friend’s family. Estranged from most of our families and old friends, my Husband and I don’t often get to enjoy the company of other people. While I initially jumped at the chance, once I started to consider the reality of going, it turned into a whole different scenario. Spontaneity is just not part of life anymore; instead, we now carefully consider the plausibility of enjoying time out.

First up:

Be honest with the people in your life; the only way they can understand all the challenges you will contend with is if you explain them

Let them know that you may need to cancel last minute or turn around once en-route, depending on how you’re feeling

Know the details of your day and destination so that you can plan and pack accordingly

If you are a guest of a guest, ask if the host will be okay with you possibly needing to lie down or going inside while everyone else is outside

Consider what challenges may need to be contended with:

It’s 87 degrees today in Massachusetts; perfectly sunny and humid

It’s about a 75 minute drive to arrive to our first destination

There is very little to no shade at either of the stops along our day

Standing to watch a parade

Knowing the details of the day better enable us to properly pack:

Scolpamine patch & Bonine for dizzy spells & severe motion sickness

Zofran & gum for nausea

A pot and lid or kitty litter bag, in case of getting sick

Napkins and wipes to clean up, from getting sick

Sunscreen, sunglasses and a floppy hat

Clothing to layer both on and off

Plenty of water for the ride

Sneakers for walking to the parade

Medications

Food, in case low blood sugar hits

Lastly:

Know and remember to accept your challenges

Assess and reassess your needs as your day unfolds

Be kind and compassionate to yourself if you need to lie down or leave early

In the end, Bri and I decided there were too many challenges associated with the day and chose not to go. While it’s super disappointing, ultimately, we knew that pushing myself beyond my limits would likely have some really negative consequences afterwards. Instead, we will enjoy the day at home and will rest assure that we will be here with our pups should there be any fireworks. Celebrating the holidays means also celebrating ourselves; limitations and all.

We would like to give thanks to all those who have sacrificed so much to enable us to even have these options to consider. We are so grateful. ❤

Great way to debate the idea of attending an event… I have never thought to actually TELL the person who is doing the inviting that I want to attend but may not be able to! My husband and I have an agreement “soft for 30” that means either of us can decide to bail from an event up to 30 minutes before we are scheduled to leave… I’m going to need to explain this to a few people! Thanks Stace! Great post as usual!!! 😊💜

Thanks so much, Kim, as always. You don’t tell people? I’m actually really surprised by that!! But you have a great agreement with your Husband in place! The people who know & love me totally understand. So as much as it’s a bummer, it’s no longer the catastrophic disappointment and guilt ridden event it once was. I hope you had a great 4th!! ❤️️

Nope. I do not talk fibro with my family… they LOST their privileges. Chronic is a long time. Although my family rallied around me in the beginning, they got frustrated that I couldn’t seem to get better. Understandable. Sad. I’ve completely taken the topic is off the table. My husband gets it, as does his family and my best friend. Other than that… I have my blogging and support group tribes! When I am with my side of the family, we just don’t discuss my health, at all. Boundaries firmly in place… I hope you’ll get 20 years in to this disease and still have the support of your family. I believe it will be very helpful.

I’m so sorry to hear this, Kim. And I don’t talk illness with family, either, because they’re all estranged now. We have my Parents, my Aunt, our 3 kids and my two best friends. That’s it. While not the exact same experience, I had too many doses of evil to consider any of them family anymore. So, now it’s just us-cozy, safe and supportive ❤️️ I’m glad you’ve now built yourself a supportive tribe!! ❤️️ So sad how many of us have similar stories.

Happy (very late) 4th of July! You’ve made such good points about looking at the pros/cons and challenges with going out and weighing up how manageable it is, and whether it’s worth it. “While it’s super disappointing, ultimately, we knew that pushing myself beyond my limits would likely have some really negative consequences afterwards” – absolutely, and that’s something I’ve been working on, too, to see the other side to it rather than frustration and disappointment, and to enjoy something else instead. I hope you’re having a restful weekend lovely ♥
Caz xx

It’s a constant battle, Caz-to look on the bright side. I struggle with it myself-you always come off so positively!!!
I sometimes find, too, that I avoid things just for the sake of it being easier (not in this instance). So on top of trying to do what’s good for me, I find I have to mitigate that with not babying myself. It’s always a fine line.
It’s crazy, when the kids were little, I was always on the go and loved being spontaneous and active!!! Now I need to pack a “diaper bag” for myself and plan absolutely everything!!! LOL
Thanks, Caz ❤️️

Stacey as I read this I felt sad, relieved and overwhelmed at the same time. I know exactly how you felt as this is a normal occurrence anytime I’m invited to anything. I know in the moment it might sound good but then as it gets closer to the day or the hours before I’m in this horrible loop of : I don’t think I’m going to go. I really don’t feel good enough to go. Etc etc. it’s a vicious cycle.
I felt sad because I hate knowing you were experiencing this and I wanted you to enjoy yourself but relieved cause I’m not alone in this and overwhelmed cause I’d love to be able to have more of my life back.; when I didn’t worry about every single little detail.
Life has been very overwhelming. It’s been a very difficult time for me these past weeks. I’ve been having a really bad time with my fibromyalgia and fatigue. On Friday 6/21 my cousin who was my age died in his sleep and I’ve really been quite numb over it. He was like my brother growing up and I had last spoken to him in November for my bday. We are all in a state of shock and sadness. I truly can’t even begin to explain all that I’m feeling. One thing I can tell you is that my body is definitely reacting. Trying very hard to keep my focus on our new grand daughter that was born on 6/12 ; there’s just so many emotions all at one time. Trusting in God to help us through this all together as a family. Stacey thank you for your post it was a comfort to me knowing that another fibro sister knows exactly what I’m experiencing. We’re not alone in this. Thank God.
Prayers always
Sandy 🙏🏻❤️

Oh goodness Sandy. I’m so sorry. I wish I could give you a hug!! So I’ll send one instead 🤗
I’m not sure whether to say I’m so sorry for your loss or congratulations on the birth……what an ultimate conundrum of simultaneous occurrences.
I am so very sorry for your loss. I can imagine that it hits very close to home; especially given the age similarity. I wish I had better advice on getting through it. As you know, I lost Scottie that way and it was a horrendous blow that sent me reeling for months; both physically and mentally. I did eventually get through it and the endless streams of incredulous tears finally stopped. It took some time, but it is better. I’m sure you’re well aware of how closely tied our emotions are to the Fibro. Any real emotional tolls always triggers a Fibro flare. I’m sorry. It makes the grieving process so much more difficult and complicated. Please try to be patient and kind with yourself and give yourself the extra care you desperately need. I will be thinking of you and praying for you, sending you all the strength I can ❤️️
Congratulations on the birth of your Granddaughter!!!! 💕🎉🎊 How awesome!!! I am sorry about the timing of her birth coinciding with the death of your cousin. Although I’m sure it’s incredibly difficult to do, I hope you can revel in her arrival as a beautiful distraction. It must be exciting to be a Grandma!!!
I will be thinking of you, Sandy. If you need to “talk”, you can email me at: litlstace@gmail.com
Sending you love ❤️Stace

Thank you so much for your words Stacey. You have comforted me for sure with your love and hugs. 🤗. You really are a blessing to us all. Thank you for your email address. I definitely will reach out to you. Your post speak directly to my heart; truly. These past few weeks have been so upside down and everything you’ve posted has really made me look at my life and relationships and moving forward.
You are in my daily prayers and I’m here for you as well anytime, day or night. Hugs, love and prayers always !
Sandy 🙏🏻❤️

Awww, Sandy, I’m so sad for your broken heart and all that comes with it. I can relate. You will get through this time, be kind and patient to yourself while you try. It won’t pass quickly-but it will get easier. I will continue to send well wishes and will pray for you. Hang in there, kiddo.
Much Love, Stace

Hello Stacey. I empathize with you…or maybe more with your husband. My wife was diagnosed some 23 years ago with fibromyalgia…which meant “we have no idea what’s going on with you”. The ME/CFS and Fibro syndromes are so unknown by mainstream medicine that it really is up to the one stricken with it to get the needed relief from the pain and exhaustion. More than likely, you’ve had to deal with a medical community that wanted to ignore you rather than try something innovative.
“pushing myself beyond my limits”…..is a constant consideration for any planning. I am glad that you have someone to support you in this.
Stay as diligent as you can. I hope you find some good days.
Robin has been on an (even more) intense nutrition quest for the last 6-8 years. She is quite sensitive to many foods and we have been eating clean for multiple years. Supplements have not achieved much…although, her migraines are not as frequent.
We suspect mitochondrial issues which are only now being researched.
After all these years, she has decided to try a medication that shows some promise. It is a very low dose Naltrexone that is used for opioid addiction and requires a compounding pharmacy to re-purpose the original dose. She is now at a point in her journey that she is not looking for a cure, just something that will improve her quality of life.
Not really sure why I thought I should say any of this…other than “there are more like you out here”

Hi Mark!! Thanks so much for reading and commenting. I’m really happy to meet you. And I’m glad you said all of that-it’s always reassuring and comforting to know that others have had similar experiences; although it makes me sad for them.
You are so right about empathizing with my Husband, Bri. Thank you for that. We don’t often discuss the myriads of ways our spouses are affected by our chronic illness, but their lives, too, are turned upside down. I am very, very fortunate to have such a supportive husband and it sounds like your wife is too. Bri has taken endless time off to take care of me and accompanied me to hundreds of appointments and tests. It’s him who stays up with me while I scream and him who catches me when I fall. Without spouses like you, I would be that much more lost and distraught. So thank you for supporting your wife.
Tightening up my diet is the next phase we need to go through. While I’ve done it before and not seen results, at this point I need to do it anyways. Like your wife, I have countless sensitivities to foods and medicines. It seems to be much in line with how sensitive my whole body is to everything; noise, pain, temperature. It’s exhausting.
The only two supplements I have found truly helpful are the Vitamin D’s; 2 & 3 and Turmeric. While I don’t notice any daily effects of them, I find a dramatic difference when I don’t take them-mood and pain with the Vitamin D and pain lessening from the Turmeric. Beyond them, I have tried and thrown thousands of dollars of supplements. Same goes with medication.
I haven’t tried the Naltrexone, because I cannot go without pain medication, but I hope it works for your wife. I have read about others finding relief with it.
Like your wife, I too have given up on finding a cure. Now, I too look for ways to improve the life I lead with chronic illness and I have found it’s better after giving up. No more chasing the nonexistent cure means I focus more on improving day to day life.
I am so glad to meet you and happy that you found my Blog!! I hope to hear more from you moving forward-it’s always so comforting to “speak” with others “like me”.
Love to you both, Stace ❤️